Confused, please help me!

[CatonTheRoof]

Hello!    Maybe some of you remember me.  I first came here in 2011,   back then I was 21 and I had just fallen sick of my kidneys and ended up on dialysis.    My dreams as student in Europe were crushed, and I had to come back to my country once again to do the treatment here.  At first I was very anxious about getting the transplant so I could retake my life.  Sadly,  it seems that I was in a waiting list of a very corrupt and fradulent organization for many years  (until the beginning of this year)   all this time I have been on Peritoneal Dialysis.   Life has had many shortcomings and limitations because of this disease (I have sacrificed social life to a great extend,  I'm grounded as moving to other countries is problematic)  and blood pressure tends to be unstable.    However, I would say that life has been generous with me and still I look healthy and haven't had any major problems.     

It could be said that maybe I'm sitting on a comfort zone now, and I'm afraid to go out of it.    I truly feel confused;  on one hand I have read during all these times bad things about the immunosuppresant drugs you have to take once you're given the graft.  How those drugs can make you weak and produce you other diseases.  On the other hand,  I feel like I would like to travel more, see the world more, and make a family in the not so long term.    These ambitions I think do go along being on dialysis.... 

I would like to know about any transplant patient here.  I want to ask you,  was it worth it?  has your life truly improved for you?    what advice would you give me?


Thanks to all!   

[UkrainianTracksuit]

Hi Caton,



Yes, I remember you. If I recall correctly, you spent some in the Czech Republic as a student prior to the kidney problems. Nice to see you after a long hiatus (on both of our parts)!

Now, I am unsure of the typical immunosuppression drug protocols in Colombia, but the same families of drugs are used when it comes to transplant most everywhere. The drugs on their own have their list of bad side effects but truth be told, the medications have become friendlier over the years. That small bit of advice from a pharmacist friend got the ball rolling for transplant for me since I, like you, heard bad things about the drugs. The other thing is that management by your transplant team is key. This is why drug monitoring is important. Your doctor will adjust your dosages so that you receive enough for the benefit of immune suppression but not too much as to minimize side effects.

I’ve only had my transplant under a year and really, quality of life is good! The drugs have been easy on me so far and besides one cold, I haven’t been sick. Some really dumb things have happened (such as wiping nose after touching a public door handle and just two nights ago, I (unintentionally) ate expired food at a Christmas party---I was fine!) However, if you take simple everyday precautions, such as washing your hands, good cleanliness, using your brain in regard to germy places, it’s an inconspicuous way of living.

You’re right: it’s not exactly feasible to move to another country post-transplant due to the medications. But, you can travel with so much ease compared to transplant. There are some places where it is suggested not to go (jungle climates, which is odd because you’re already in South America, but germs and bacteria in the jungle... and then, places that are dirty without good infrastructure.) With a transplant, you can stay in places a little bit longer because you’ll have your own medication supply rather than strategically booking/paying for dialysis sessions, or in your case, supplies for PD exchanges.

Yes, you can go on to have a family too. You’ll have the energy to do so. One of the things to keep in consideration though is, once again, the medications. You will probably be on a protocol including MMF (mycophenolate mofetil) and that can be passed on with your sperm. (My apologies in getting blunt here.) According to the pamphlets, and the sex-ed information provided by my transplant center, you’ll have to use a condom while using it and then some months after you stop using it. So, when you decide its best to start a family, if you are on this drug, it has to be planned. Lots of people, men and women, have gone on to have families post-transplant so, your dreams are achievable with a transplant.

Other areas of your life become more accessible too... think of working, studying, sports...

Other people have their transplants longer than I so they could give you a better picture of life long-term. I’m only at the point where I have to reassess my life and see what is possible at this point. It’s not easy for me and I admit, causes a bunch of anxiety. My perceptions of quality of life are my own social constructs (what I want) and really have little to do with the effect of transplant. Transplant has made changes possible but, what do I want, you know? But, understand that transplant is a form of treatment that offers the most normal life. Don’t go into the transplant process with preconceived ideas that it is going to be “bad” and think it will limit you. Obviously, it's not a bullet-proof form of treatment, but neither is dialysis, so you take the good with the bad. If all goes well, the reality is good for a young person. Good luck.

[CatonTheRoof]

Hello!  it's so nice to hear you back, I will send you a PM regarding both topics in which you have replied to me

[Michelle2016]

I had my kidney transplant in 2001. Life is getting much better after it. I went to school and start my second career at 43 years old. I did have up and down life sometimes. I make sure to take medications, eat healthy, and exercises. Every morning I thank God and my donor for this second chance.

[kristina]

Hello Caton,
I  just had my kidney-transplant a few weeks ago and even though I felt extremely well treated in my dialysis center (very lovely understanding people working there and they always accommodated, whatever was needed and despite the fact that I am still very exhausted and tired from the transplant-operation, I can feel already the great difference. The travelling there and return to and from the three-times-a-week dialysis-center, already seems ages away and I must say, I feel a bit strange and odd about feeling like this, because I really had the very best understanding and professional nurses, doctors and staff at the dialysis-center and had no reason to complain about anything, but nevertheless, to be able to use the bathroom and slowly become independent again is a whole different story ... 
Mind you, instantly after the transplant - life is not a walk in the park - and the first two weeks can be very tough with a touch of rough, but then it slowly begins to ease a little ... I just hope that I survive the first three months without complications and then another nine months to "get over" the first crucial year ...
Best wishes, good luck and best Season Greetings from Kristina.

[MooseMom]

I knew for many years that I was eventually headed toward dialysis, and my life was hell.  I was in a constant state of despair.

Ironically, my mother ended up on dialysis before I did (I have FSGS, and my mother lost her kidney function due to an aortic aneurysm repair gone somewhat wrong), so I got to see the dark side of dialysis through her.

I was always told by the lovely people here that the anticipation of dialysis would prove to be far worse than the actual event.  Fortunately, I didn't have to find out because I was lucky enough to get a kidney before I had to start.

I wish I could say that I had been braver and more sanguine about the idea of being on dialysis, but I can't say that and remain honest.  My son lives abroad along with a lot of my friends, and the idea of not being able to go and see them was my ultimate horror.  I tried so many, many things to lift the depression I fell into. 

The bottom line is that I didn't think twice about transplant and even less about the meds.  Whatever it took, I would do it.  I would do anything to keep off dialysis. 

I have not had any problems with the meds other than a bout of neutropenia (too few neutrophils) a few months out from transplant, but two shots of Neupogen took care of that.  Other than that, nothing.

I live a perfecty normal life and just this year, I've been to Norway, Canada, Alaska, Michigan and the UK.

More importantly, my state of mind is much, much improved.  Before transplant, I saw no future for myself.  Today, I can make my own future.  I am psychologically much stronger.

If you have more specific queries, just let us know!

[CatonTheRoof]

Thank you all for your amazing replies, they really lift up my mood!    Especially like the part about being the driver of your own destiny.   A recurrent feeling on dialysis that you feel so much dependence on others and on the process itself, is hard to look forward to brighter,  better future...

[Naynay99]

Hey. So I had my first kidney tx at age 13, and it’s still working somewhat almost 30 years later.
So Is it worth it?  Definitely.  It gave me a normal life.  I got to have a normal high school experience.  Went away to college.  To grad school. Got a good job. Have a nice apartment that I share with 2 kitties.  Filled up my passport with stamps from tons of amazing places.  None of that would have happened if I spent all of my teen and young adult years stuck on dialysis.  Until recently the only real difference from a “heathy” person was that I have a scar and take pills two times a day and see my kidney doc every 3 months.  I’m not saying there aren’t costs.  Whether from the antirejction meds or the trauma of being sick or both, I did have some pretty awful depression episodes to get thru.
But still, in my opinion, the benefits to a transplant far outweigh any costs.  It has the potential to give you your life back.
I am now listed once again on the tx list and wouldn’t think twice about accepting a kidney if I got the call. 
Right now I am twitching a bit  from not being able to hop on a plane and leave the country for a 4 day weekend just because I can.
But I don’t want to be that far away from my tx center in case I were to get that highly unlikely call for a preemptive transplant.
Anyway Good Luck.  Take care.